Jockey Club End-of-Life Community Care Project
JCECC Capacity Building and Education Programmes on End-of-Life Care
Case: Mr Chau
Disagreements over timing for advance care planning
Introduction: This video aims to discuss the clinical ethics case as a scenario of moral distress in which the healthcare professionals might be confronted with disagreements over timing for advance care planning.
00:11 Case description
05:58 Case commentary
06:20 How does the nurse Ms. Leung know that her suggestion is the right thing for the patient?
06:40 Was the doctor-in-charge Dr. Kam wrong?
07:22 Was the patient’s concern just about the BiPAP mask?
08:05 On moral distress
08:46 What can the nurse do?
09:21 Case commentary wrap up
Mr. Chau is a 75-year-old man who lives at home with his wife and his son’s family. He was a former smoker and suffered from chronic obstructive pulmonary disease (COPD) for many years. Over the past year, he has become more easily short of breath with routine activities like walking around his home, dressing himself or taking a shower. He has also experienced more frequent exacerbations that led to several hospitalizations. In the last six months, he’s already been admitted three times. Each time, he was put on a BiPAP machine for several days before his condition improved.
Last week, Mr. Chau was admitted again for another exacerbation of his COPD. After a week of treatment in the respiratory ward, he was finally able to come off the BiPAP mask. However, when the food tray was delivered to Mr. Chau, he pushed the food away. Ms. Leung, a registered nurse in the ward, saw this and recognized Mr. Chau from previous admissions. She approached Mr. Chau to ask why he didn’t want the food.
Mr. Chau answered, “What’s the point of eating? Just to keep coming back like this and be put on that mask? I’m as good as dead!”
Concerned, Ms. Leung asked Mr. Chau, “Is something wrong? I thought you’d be glad to come off the mask today.”
Mr. Chau said, “Well, it’s just temporary. I know how bad things are with my lungs. It’s just a matter of time. I just don’t want to go through the same ordeal over and over again, in and out of the hospital. Then one day, game over. If I’m going to die anyway, I don’t want to be strapped to that mask up the final moment! You know how awful it is to be on the mask? You can’t eat. You can’t talk. It just blows air into your face!”
“It sounds like you’re really concerned about being put on that mask again,” Ms. Leung said.
“Yeah. I don’t ever want to wear it again! Just let me go without making me suffer through all that! I’ve had enough!”
“Have you told your family how you feel?” asked Ms. Leung.
“I tried. But my wife and son…they won’t listen. They don’t want me to talk so negatively. They said that I should just listen to the doctor. The doctor barely even has time to talk to me!”
Feeling that Mr. Chau is probably correct about the advanced stage of his lung disease and that he’s reasonable to prefer to be comfortable at this point, Ms. Leung decides to discuss Mr. Chau’s concerns with Dr. Kam, the doctor-in-charge. She suggested that Dr. Kam should hold a family conference to explain his poor prognosis with his wife and son and to sign an advance directive for Mr. Chau.
However, Dr. Kam disagreed. “It’s too premature to sign any advance directives and discuss end-of-life care issues. Mr. Chau’s condition can still be relieved by the current treatments. He’s ready for discharge soon!”
Ms. Leung felt powerless and does not know how she can help Mr. Chau.
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– Dr. Derrick Au Kit Sing, Director, CUHK Centre for Bioethics
We may discuss this case as a scenario of moral distress in which the nurse Ms. Leung felt powerless for being unable to do what she considered the right thing for the patient, as the doctor-in-charge held a strong opposite view on what was right.
Ms Leung’s suggestion was to hold a family conference to explain the poor prognosis to the family, and to sign an advance directive for the patient.
Before considering her moral distress, it is useful to take a step back to ask a few questions:
How does Ms. Leung know that her suggestion is the right thing for the patient? One point is in Ms Leung’s favour – Mr. Chau has tried but failed to get his family to talk about this issue. We can therefore be quite certain that a dialogue is what he wants. Note that the patient’s readiness is an important consideration in deciding on the timing for advance care planning. Was the doctor-in-charge Dr. Kam wrong? Dr. Kam seemed to have bundled ‘discussing end-of-life care issues’ with ‘signing advance directives’. In discussing end-of-life care issues and allowing the patient to express his/her wishes and values, the advance care planning process may or may not end up with signing an advance directive. In a fast-paced hospital operation, squeezing in the signing of advances directives into the short pre-discharge window may indeed be undesirable, but it is a reasonable time to initiate a dialogue with the patient and the family. Key decisions on withholding life-sustaining treatment such as BiPAP do not have to be forced into one session, but encouraging family members to listen to the patient may be achievable. Note that in this case the nurse Ms Leung apparently also fell into the same trap of bundling end-of-life care planning with the immediate decision to sign an advance directive. Had she put forth the suggestion to initiate a dialogue rather than immediately holding a family conference to sign an advance directive, she might have had a better chance of getting her suggestion supported. Was it just about the BiPAP mask? Mr. Chau was particularly vivid in articulating the burden of BiPAP, but he also questioned the point of eating, and expressed in general that he did not wish to go through the same ordeal over and over again, in and out of the hospital. It would be valuable to explore more about Mr. Chau’s perspectives on medical care. Rather than narrowing focusing on his dislike of BiPAP, the clinical team can find out what medical care Mr. Chau considers too burdensome or intolerable and what he hopes the care to focus on, to develop a plan that honours his wishes appropriately. Some assessment of his mood may also be called for. Depressive state is not uncommon in patients with advanced organ failure, if significant it may cloud the patient’s judgement and perceptions on care plans. Without adequate background exploration and assessment, going directly into a family conference to make an advance directive may be undesirable. On moral distress As separately reviewed by Prof. Helen Chan, “moral distress” was first defined by Jameton (1984) as the negative experience among health professionals when they know the right thing to do but cannot pursue that course of action due to institutional constraint. Much of the literature on this subject focus on moral distress in nursing. The definition of moral distress by Jameton may be disputed. A professional in moral distress is not always right. Moral intuition (‘knowing the right thing to do’) should go hand in hand with moral reflections and openness to ethical reasoning. Is the ‘institutional constraint’ real or perceived? If a nurse feels powerless, is it due to a culture of medical dominance (nurses expected to follow doctor’s orders), or is it due to the individual nurse’s lack of confidence to effectively articulate her case? Nonetheless, it should be fair to say that in some healthcare institutions, the ethical climate is clearly unfavourable for a ‘speak-up’ culture, and unsupportive of staff in moral distress. What can the nurse do? Ms Leung may feel less distressed if she can explore the patient’s wish further. The patient did not ask for a family conference to immediately sort out end-of-life issues and advance directives. What does he really want? As a first step, she may try to ascertain whether Mr. Chau does indeed wish healthcare professionals to mediate a dialogue with his family members concerning his future care. She may then relate such a wish to the wife and son, and at the same time provide them with initial information on the value of the advance care planning process. Mr. Chau is likely a long-term follow-up case. Once such initial exploration has taken place, further dialogue may be possible.
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This may be a pragmatic approach to overcome a deadlock. One may argue that taking the pragmatic approach does not always work, and there may well be other scenarios where institutional constraint is undisputable and even unfair. In some circumstances, a healthcare professional may need to bring up the issue of concern to hospital management, or raise conscientious objection to unethical practice.
In this particular case, it would appear that there is room for further assessment of the patient, positive communication within the team, and dialogue with the patient’s family.